Finding out about your treatment options
How much information you need is up to you. Some people want to find out as much as they can about each treatment option. Others prefer to know just a little.
You may not have to make decisions about which treatment to choose. Sometimes there will only be one treatment option. But you may want to choose whether or not to go ahead with treatment.
We can’t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history.
The doctors and specialist nurses treating you (your healthcare team) will encourage you to become involved in your care. Then you can make decisions about your treatment together.
Information about the cancer
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To help you make a decision about treatment, it’s useful to know a bit about your cancer type, how it’s affecting you and why you need treatment. This will help you understand your treatment options and make sense of other information you may find. Your healthcare team will be able to tell you:
where in the body the cancer started, such as the breast, bowel or prostate
the size of the cancer and whether it has begun to spread to other parts of the body – this is its stage
what type of cancer it is – whether it’s a carcinoma, sarcoma or lymphoma, for example
how fast-growing the cancer may be – this is its grade.
Information about the treatment
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It can help to know what each treatment involves and how the options may differ. It’s useful to know:
the aims of the treatment
the possible side effects of the treatment
how the treatment will be given and how this may affect your day-to-day life
what treatment your doctor or specialist nurses recommend
what will happen if you don’t have treatment
whether there are other treatment options that you have not been offered.
You may be able to get all the information from your healthcare team. They should also be able to answer your questions and give you some written information to take home.
You may find that this is all you need and you’ll want to get on with the treatment. Or you may want more information before making a decision.
What further information do you need?
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Before you look for further information, think about what you really want to know. What would help you decide about the treatment options you’ve been offered? Do you need more medical information, or do you want to know more about the side effects and practical aspects of the treatment?
You might find it useful to write down any questions you have. This can help you to focus on the most useful information for you. After you’ve done some research, look back at your questions to see if they’ve been answered.
Reliable sources of information
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There are many ways to find out about the treatment options you’ve been offered. Getting information from reliable sources means you can be sure it is accurate and up to date. You can find reliable information from:
your healthcare team
cancer information organisations
other people who have been in a similar situation.
Your healthcare team
Your doctors and nurses can talk to you in more detail about your treatment options – including the aims of the treatment and how it may affect you. It’s a good idea to think about questions to ask them. You might find it useful to read our suggested questions to ask your healthcare team. They can also help you understand other information you may have found, such as results from research trials and how this may relate to your situation. We have more information about how clinical trials can help you decide.
Although a team of doctors, nurses and other specialists work together to plan your treatment, you will usually have one main cancer doctor (oncologist). This is often a consultant cancer specialist at the hospital, but may be another type of specialist. If you are unsure who this person is, ask any of your healthcare team. Any member of your healthcare team can give you information.
You might find it helpful to take someone, such as a relative or friend, with you to your hospital appointments.
Cancer information organisations
There are many organisations and charities that can give you, or help you understand, cancer information. Many employ specialist nurses and some use volunteers who have experience of cancer. They can often answer your questions and give you detailed information.
Charities may have written information they can send you, and most will have a website. You can use our search tool to find other useful organisations.
The internet can be a good source of information. Many people use it to look for health information. However, it’s important to make sure that any online information you use has come from a reliable source.
Some websites have logos to show that they have been certified as providers of up-to-date, high quality information. For example, the Information Standard quality mark seen on Macmillan’s information.
To check if a website is reliable, you should think about the following things:
Is the information regularly updated?
Check when the information was last updated, edited or reviewed to make sure that it’s still accurate. You should be able to find the date on each page of information.
Is it clear who has written the information?
A good website should tell you about the organisation that has made the pages or written the information.
Are there references?
The website should list its sources of information. Check that the publication dates for the references are also up to date.
Is the website sponsored by a company?
This may mean the information is biased towards that company’s products or services.
Is the website trying to sell you something?
A good information website won’t do that.
If you're not sure, ask someone to help you. Relatives, friends or staff in your local library should be able to help. Some hospitals have cancer information and support centres where you can use the internet. There should be someone available to help you.
If you use a search engine (such as Google ® or Yahoo ®), try to be specific and narrow your search to exactly what you’re looking for. For example, if you’re looking for information about the side effects of chemotherapy, include the drug name you’ve been offered. This is better than searching for chemotherapy in general and will give you better results.
If you find a helpful website or some good information, you can save it to your browser so that you can find it easily another time, for example if you're using Internet Explorer, save the page as a ’favourite’, or ‘bookmark it’ if you're using Chrome. Ask someone to show you how to do this if you’re not sure. It may not be possible to save these pages if you're using a computer in a library or cancer support centre, so you could print the information or take notes. Remember to note down the web address (url) of the page you are looking at. For example, www.macmillan.org.uk
Other people who have been in a similar situation
I was thankful for the people who gave me their honest opinion. I didn't necessarily take their advice but looked at all the information and then decided myself what was best for me.
Sometimes it can help to find out about other people’s experiences. You could do this through an online community or forum or at a local support group. Our Online Community is a place where you can chat to people in online forums, blog about your experiences and make friends.
Your doctor or specialist nurse may also be able to put you in contact with someone.
Remember that everyone’s situation is different. Other people won’t be able to tell you which treatment will be more effective for you or exactly what side effects you’ll get. Only your doctor or specialist nurse can answer those questions. But they can tell you what it was like to have the treatment, how they felt and what helped them cope with any side effects.
Getting help finding more information
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Your family and friends may want to help you find out more about treatment. It’s a good idea to make sure that they know exactly what you’re looking for, so they don’t waste time searching for information that isn’t going to help. You could ask them to make a summary of what they find so you don’t end up with lots of pages to read through yourself.
Advice on other treatment options
While doing your research, you may read about a treatment that you haven’t been offered. This may be because it’s a very new treatment that’s still being evaluated in a research trial. Or your hospital may not offer that particular treatment or it might not be available on the NHS or in the UK. We have more information about why some treatments aren't available.
If you would like to consider a treatment you haven’t been offered, discuss it with your healthcare team. They can tell you whether it’s an option and how to go about getting it. You may need to be referred for a second opinion or to a private hospital. This may cause a delay in starting your treatment.
If you have just been diagnosed or the cancer has come back after previous treatment, it can be difficult to focus on the treatment options you have been given. You may think that there’s too much information and feel confused or overwhelmed.
Depending on your situation and what information you’re looking for, you may find that some things you hear or read are upsetting. This can be difficult to cope with at a time when you may already be feeling emotional and vulnerable.
It may help to discuss your feelings with your healthcare team, or a counsellor, relative or friend. You may find our section on coping with the emotional effects of cancer helpful.
David Plume explains the benefits and disadvantages of getting a second opinion about your treatment.